Oh, the Inflexibility

As many parents of children with Asperger's could probably tell you, Asperger's children are very inflexible. They want things done their way, and they want things done in the same way. All the time. And this inflexibility includes planning for the day as well. If I say we are going to do something (or not going to do something) and the plans change, it throws A off, and completely ruins her day. It is so difficult for her to adapt to changes once she has things set in her mind. Which in turn, makes it difficult for us. So, we've learned to be very careful with how we word things. Instead of "we're going to the grocery store today" we might try to say "we're going to try to make it to the grocery store today." But then of course we find A following us around all day asking if we're going to make it to the grocery store. Uncertainty, too, causes her anxiety.


So, how much inflexibility do we allow? There are many days where it is impossible to stick to the original plan. There are too many factors to consider. Time. Weather. What if the car breaks down? What if someone is sick? What if the dog is sick? What if the store closes before we make it there? Once, we planned to go swimming, and the pool had to unexpectedly shut down because of a contamination issue. Nothing is certain. And that drives A crazy. And isn't it important for her to figure out a way to adapt to unexpected events?


There are days where the meltdowns are too much for us to handle, and you'll find us bending over backwards to make sure all goes as planned. Today has been one of those particularly difficult days. I've been very frustrated most of the day, and of course so has A. I felt my own meltdown coming, when suddenly I found A sitting at her work table crying. Not because something unexpected was happening, but because the dinosaur she was drawing didn't look good (to her).


Another thing many parents of Asperger's children can tell you: our children can be perfectionists. Which means they can be so hard on themselves. A was beside herself over her drawing. And I heard these heartbreaking words spilling from her mouth:


"I'm the worsest girl in the world."
"I'm the worsest drawer in the world."
"My pictures never look real. They're the worsest."
"Everyone is better than me at everything."
"Do you even still love me?"


Granted, the last question was probably because she could sense my mounting agitation with her as the day wore on, but it was all too much negative energy for a six year old girl. We chatted and talked about being proud of our work, and being proud of whatever it is that we accomplish. She eventually claimed to understand what I was saying, but I know she won't put it into practice. For this is the 1000th time that we've discussed this.


So, someone tell me that she will get better with this. That all the "stuff" that Asperger's children have to deal with in a day will get easier for them. That she'll find ways to adapt, and be more flexible. That she'll be flexible with herself and not expect perfection out of herself, all of the time. That every day won't be so hard, and won't be such a struggle.


We're forcing her to adapt to the world, but is it too much to ask the world to bend a little for her? Shouldn't we all do a little bit to make the world easier for those of us who are different?


In the meantime, A's masterpiece: a beautiful striped pterosaur that I fished out of the garbage and uncrinkled.